Web Exclusive

Bearing Witness — A Hospice Social Work Intervention
By Sarah Stroe, MSW

Kathy was a tiny woman with a long scar that ran from her hip to her ankle. Before she entered our hospice unit, she’d had a femur replacement.

“Why they would want to do a femur replacement on a terminal patient is beyond me,” she said to me one day. I was helping her drink ginger ale through a bendy straw. I had come into the room a few minutes earlier and found her on the verge of tears. She had spilled soda on her bed and was worried that the nurse was mad at her.

That day, Kathy was bundled in her bedsheets, the small blanket some brigade of volunteers had knit for her wrapped around her chest, swaddling her collarbones and shoulder blades. She was bald with thin, chapped lips and wide-set eyes. There was an ashy quality to the thin skin on her forehead and chin. Her frame was tiny but covered in tattoos; a wedding ring circled her left ring finger, with a cat on her ankle perched near the new scar. All the marks told stories of who she had been. But in this moment, she was scared, tired, and in pain that wasn’t being controlled by any of the drugs we were giving her.

Kathy came to hospice having been an IV drug user. Her body was used to the gigantic doses of methadone she took to curb her cravings, only now we were trying to help her ease a different sort of pain. She would gamely sit in bed and swallow more than 30 pills. She told me, laughing, that when she first came in, she shocked the nurses by taking them all in one gulp.

Kathy knew what drugs worked for her and which ones didn’t and told the staff just that. Ativan made her feel funny, and she didn’t want it.

She liked to talk about happy things when she was feeling sad. It helped, she said. We would sit together and talk about food she used to like—Mexican and Italian—and about a tiny dog she once had run after as it ran away from home. She had children, but they all lived in New Jersey. “They all left but me,” she said to me. As she grew closer to the end of life, her voice got smaller and smaller. 

Being There
There isn’t a happy ending to Kathy’s story. She didn’t have a glowing reunification with her family. People came to visit her when they could in their own busy lives.

Before she had gotten sick, she was a person. She was flawed and likely frustrating. Her family had their experiences with her that were decades long.

I interacted with her for a few short days while she was bundled in blankets, her requests mostly pragmatic. I found her the TBS channel on TV. I brought her ice packs and more Pepsi. I sat in a chair next to her bed and talked to her and held her hand until she fell asleep.

Kathy died in the middle of winter on a day that I was away. Her family had come to visit her, but I had never met them. I made a bereavement phone call to her son and left a message. I didn’t hear anything back.

It isn’t often in social work practice that we have an order to just be present. More often than not, we are asked to move mountains on a shoestring budget in a way that doesn’t ruffle any feathers. There is something addictive about that pandemonium, about memorizing acronyms and thinking quickly and rushing from one client to the next. Part of what I cherish about hospice work is that it challenges me to do the opposite. So often, the most useful intervention I can offer to a patient or a family is to simply bear witness to their experience. I know as a hospice social worker I can’t fix what is happening. The past is over, and the end is inevitable.

Not being able to fix what is wrong with a patient in hospice is a constant exercise in patience. It is rare that I have the answers people are looking for: I don’t know when someone will die. I don’t know why an extubated patient who hasn’t eaten in days is still living. All I can really offer are suggestions and a moment of perspective. I can’t time travel, and I can’t magically heal the sick.

I have learned, however, to sit quietly next to someone’s bed, to hold their hand, to look at the wrinkles on someone’s forehead and assure their family that they don’t look like they are in any pain.

As a hospice social worker, we are asked again and again to sit with someone as they embark on a journey on which we are not going and cannot go. There are moments when I think about the pain patients are in and the scale we ask them to rate it on—from zero to 10, we say. But what is an eight out of 10 to someone who is lonely? What is a four out of 10 for someone who is ready to die?

To work in hospice is to work in a theoretical state. We hover over the edge with patients and their families as they drift from this world to the next. The most frequent phrase I utilize is “existing in the gray.” People on our unit are rarely entirely in one world or another. Working with patients on the edge of death means peeking over cliffs into dark, endless valleys of questions, fear, relief, deep, deep sadness, and deep, deep joy. It’s like being a guide to someone in a cave, with just a headlamp to guide the way. My tiny beam shines only feet in front of me, but I’m following the light, hoping that it’s bright enough for others to see as well.

— Sarah Stroe, MSW, is a recent graduate of the University of Pennsylvania. Prior to hospice care, she worked with adults with disabilities and high school students in West Philadelphia. She is the winner of the Virginia P. Robinson Publication Prize of the University of Pennsylvania.